Hi-Risk/Recurrent/Advanced PCa Video Chat, June 13, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant & Telix
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/
Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s pick: Prostatectomy after 70. Also: Pluvicto wiped out 99% of his cancer — time for a jig! (bn)
Topics Discussed
Metformin’s faded glory in PCa treatment; grateful for heads-up on Xgeva with radium-223; statins and PCa — still anybody’s guess; darolutamide monotherapy might cut fatigue; curious about new hot-flash drug for women; experience with Onco360 pharmacy; when will white blood cells rebound from radiation; bike seats and PCa; seeing metastasis in lymph nodes that radiation skipped; dry mouth and depression overshadow wild Pluvicto success; too old for prostatectomy?; Keytruda and more Keytruda.
Chat Log
Steve in MI · 6:09 PM
Suttons Bay is nice; my wife has a few properties she manages up there. We get to Interlochen at least 2 or 3 times during the summer for concerts. Styx is the next one.
Steve in MI · 6:13 PM
There is a few up around here in the summer: Charlevoix, Fish Town, Elk Rapids. Ours is in August I think.
Julian – Houston · 6:18 PM
stopped taking because it made my bones ache!
Gary P · 6:20 PM
While not actually diabetic, I was put on Metformin after my blood sugar levels went up significantly on Abiraterone.
Julian – Houston · 6:24 PM
Same here, Gary. Took for awhile and my A1C came down.
AnCan – rick · 7:33 PM
“Patients received Pluvicto 7.4 GBq (200 mCi) every 6 weeks for up to a total of 6 doses plus BSoC or BSoC alone.”
BSoC = best standard of care
Tom Maloney · 7:34 PM
The recommended Pluvicto dose is 7.4 GBq (200 mCi) intravenously every 6 weeks for up to 6 doses, or until disease progression or unacceptable toxicity.
Tom Maloney · 7:34 PM
up to 6 doses, not requiring 6 doses.
AnCan – rick · 7:34 PM
The trials all gave 6 doses
Len Sierra · 7:36 PM
Tom, the dry mouth usually resolves by itself soon after your treatment is complete.
AnCan – rick · 7:38 PM
We do not know anyone who did less than 5 doses by choice. Doesn’t mean there aren’t any. However your doc is recommending you finish up.
AnCan – rick · 7:39 PM
We’ve seen less than 6 doses but only where blood counts or other markers have been compromised.
AnCan – rick · 7:45 PM
Xgeva = denosumab
Steve in MI · 7:52 PM
Keep coming back Spencer.
? · 7:52 PM
Thank you to everyone for excellent advise.
Joe (Dubois WY) · 7:59 PM
keytruda
Julian – Houston · 7:59 PM
Keytruda
Julian – Houston · 8:00 PM
Thanks guys. Another great session.
Hi-Risk/Recurrent/Advanced PCa Video Chat, June 5, 2023
AnCan is grateful to the following sponsors for making this recording possible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Genetics, Myovant & Telix
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
Apologies to all who attended live last night! GoTo issued a massive update over the weekend and did not advise their customers. Some folks couldn’t even open their rooms – in our case we lost video. Citrix support was less than honest, causing even more grief. As you saw we had to shut down the room and restart after they reset our settings. It put me in a very grumpy mood … :-(( – apologies if I offended anyone!
Editor’s Pick: I could go for the very end with ice cream and Capt Joe’s tips on koi – BUT how about somatic testing?! It’s so important, many docs don’t test, and when they do, forget to repeat!
Topics Discussed
Dx at a young 80, denovo Nx; time to switch from the VA?; Gents wants to add abi but doc reluctant; chemo fails – nothing sticks… what next but somatic testing!; multiple treatment modes at one time;…and another without answers who needs testing and a GU med onc; retention issues from RT damage – back to rad onc; our foamy gland guy holds steady; switching to Metformin for diabetes … and cutting out the ice cream!; all you ever wanted to know about keeping koi!
Chat Log
rd sent · 5:31 PM DELMARVA gents… organize a lunch!!!
rd sent · 5:48 PM somatic testing
Julian – Houston sent · 6:31 PM good evening everyone – see you next week! Thanks!!!
AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
AnCan Foundation deeply mourns our dear Board & Advisory Board Member, Moderator and Brains Trust Brother, Herb Geller. To read more click https://mailchi.mp/ancan/remembering-…
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s pick: Stay alert for morphing if your PCa acts weird – and great ACS tip if you need a hotel for medical reasons.(rd)
Topics Discussed
Diagnosed 4+5 in 2009 and still going strong; probably ain’t the abi – gotta exercise !; urinary retention; holding steadyl ; snady mouth and Sjogrens could come from Keytruda; Neulasta side effects; watch for small cell and adjust treatment; lung nodule could just be liquid; 97% continent 9 mo after surgery; seeking a Center of Excellence for RT proved wise; ACS can help with hotels; HT shrinks lesions
Chat Log
Tim Valle and Jen Turner-Valle , Boulder, CO sent · 5:07 PM
It appears that prostate bed recurrence after RP + adjuvant RT is 13.3% (ok, almost 15%), after RP alone is 20.6% in the prostate bed, and after RT in-gland recurrence is 64%.
These are links for Dr. Sartor’s bio. They both have him at Tulane.
Ben Nathanson sent · 5:50 PM
If you would like to schedule an appointment to see me at Mayo, you will need to call the Medical Oncology New Registration Phone Line: 507-284-4137 Fax Line for patient records: 507-266-4973. You will need to indicate that you are a patient of mine from Tulane, and we will help coordinate your records to them. Becky and Brigitte can help with Tulane records.
eric sent · 6:23 PM Have to go, but wanted to check in. I doing well excersing everyday and coaching soccer now. I would just say to the group meditate and be active and live while you do it. Talk to you guys soon
AnCan- rick sent · 6:24 PMTx Eric – try to get by 10 minutes aftr we start so we can check in with you
Very good info. I stayed at Extended Stay America a couple of weeks agp and it cost me $200.00 for one night. When I go back I will ask for the discount. Thank you again for the info.
TonyFig sent · 7:12 PM
Many of the cancer treatment centers have social workers. If you contact the social workers, they usually have arrangements with local hotels for free rooms or discounts, plus gas cards.
Robert Glover (Colorado) sent · 7:12 PM
(contact rd@ancan.org) for Rob Glover’s email re. info on America Cancer society hotel reservation info.
Hi-Risk/Recurrent/Advanced PCa Video Chat, Apr 3, 2023
AnCan is grateful to the following sponsors for making this recording posssible: Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s pick: Hang in to the end when we have a good discussion around BCR – biochemical recurrence. (RD)
Topics Discussed
Update on Professor Herb; recurrence in BRCA+ man reluctant to undergo salvage RT; firsthand experience with pelvic floor therapy; how does testosterone recover post HT; more chemo vs worsening side effects as PSA plateaus around nadir; what type of RT is being used for salvage?; with Pluvicto shortage, maybe Xofigo first?; Pluvicto triage update; T comes back and PSA moves a tad post treatment; deciding whether to complate Pluvicto cycle; when to intervene post RP as PSA inches upwards; what constitutes biochemical recurrence?;
Ben sent · 5:55 PM An important element of EMBARK was that study treatment was suspended once the PSA was less than 0.2 or if it was less than 0.2 at week 36 and then restarted when the PSA was greater than or equal to five for those without prior radical prostatectomy and greater than or equal a two with those who had received primary prostatectomy.
Terrill SF sent · 6:08 PM must leave early…see you all next time
Anthony Pizzoferrato sent · 6:11 PM I will listen to the video for any more information. Need to go. Thanks everyone.
Anthony Bill Franklin sent · 6:20 PM Wang Gao Shan, also, don’t worry too much about the number but more about how you feel and what you can do. Prior to my treatment my T levels were always over 600. Post treatment it never came back higher than 350 but I really can’t tell the difference. Still very active physically and sexually and no worries. It’s all how you feel.
Jack sent · 6:22 PM excessive B-6 can interfere with the effectiveness of cisplatin.
Frank Fabish Columbus OH sent · 6:31 PM Got to go. Thanks guys.
Mark Thompson, Rehoboth Beach, DE sent · 6:35 PM Thank you all for a great discussion tonight. I have several doctors appointments tomorrow so I am going to bed. Still dealing with extreme fatigue. Thank you, Mark Thompson
Bob G sent · 6:57 PM Oh! will send an email with some ideas
Julian – Houston sent · 6:59 PM Another great discussion. Thanks everyone. Good night.
sent · 7:00 PM Nice meeting everyone. Thank you for the support and constructive input. Be safe. Stay strong.
Don Eisner sent · 7:01 PM Have to leave
Ben Nathanson sent · 7:01 PM PSA persistence/recurrence after RP is defined as * failure of PSA to fall to undetectable levels (PSA persistence) or * undetectable PSA after RP with a subsequent detectable PSA that increases on 2 or more determinations (PSA recurrence) or that * increases to PSA less than 0.1 ng/mL. RTOG-ASTRO (Radiation Therapy Oncology Group – American Society for Therapeutic Radiology and Oncology) Phoenix Consensus: 1) PSA increase by 2 ng/mL or more above the nadir PSA is the standard definition for PSA recurrence after EBRT with or without HT; and 2) A recurrence evaluation should be considered when PSA has been confirmed to be increasing after radiation even if the increase above nadir is not yet 2 ng/mL, especially in candidates for salvage local therapy who are young and healthy.
John A sent · 7:10 PM sorry to leave mid discussion guys, gotta go
Joe Comanda sent · 7:13 PM What is the proper approach to ask questions in this group: 1) save them up for the next meeting or 2) send email questions or 3) put them in this chat list?
Hi-Risk/Recurrent/Advanced PCa Video Chat, Mar 20, 2023
AnCan is grateful to the following sponsors for making this recording posssible:
Bayer, Foundation Medicine, Pfizer, Janssen, Myriad Gentics, Myovant & Telix
IF YOU HAVE NOT YET WRITTEN TO THE FDA ABOUT THE PLUVICTO SHORTAGE – PLEASE DO. DIDN’T RECEIVE OUR REQUEST … LMK rd@ancan.org
UPCOMING WEBINAR What is a Pelvic Floor Physical Therapist – & why you need one Wed, 3/39 8pm Eastern Dr. Rachel Rubin + Pelvic PT Tracy Sher Register https://tinyurl.com/4sdhzucf
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Editor’s pick: What’s to fear about hormone therapy when intermittent is an option? (rd)
Topics Discussed
Recurrent gent from 2013 has not yet had HT .., and fears it; successful hyperbaric Tx for RT cystitis; update on capaversitib trial; ‘young’ man starts IHT after 10 years; how many chemo cycles??; more IHT; what’s the right HT combo with heart issues? … and the right SPOT RT?; very low level recurrence after 6 years; Herb’s brief update; Next Generation Sequencing; dispelling the fear of HT
Chat Log
David Muslin sent · 5:41 PM also Joe, attending these Ancan meetings educated me enough to no longer fear our disease. We welcome your attendance.
AnCan- rick sent · 5:53 PM UPCOMING WEBINAR What is a Pelvic Floor Physical Therapist – & why you need one Wed, 3/39 8pm Eastern Register https://tinyurl.com/4sdhzucf Dr. Rachel Rubin + Pelvic PT Tracy Sher Wed, Mar 29, 2023 8:00 PM – 9:30 PM EDT
AnCan- rick sent · 6:05 PM capavasertib + docetaxel
Richard Tolbert sent · 6:11 PM Jim, I was able to receive $3500 from the Co-Payment Assistance Fund which covered my Feb Orgovyx and Xtandi. Earlier today I received some fiunding support from a private healthcare company which will help. Thanks for asking Jim!
Peter Kafka-Maui sent · 6:14 PM See you all next week. Got to drive my grandchildren down to beach volleyball practice.
George Rovder, Arlington VA sent · 6:14 PM Thank you Gentlemen for your wisdom and caring. Gotta go now.
Jim B sent · 6:15 PM Great to hear that worked out for you! I think that I may have mentioned that I had success with the Mark Cuban Cost Plus web site which gave me access to medications at remarkably low costs.
Richard Tolbert sent · 6:23 PM You did mentioned Mark Cuban Cost Plus. I checked and Orgovoyx and Xtandi are not available since there is no generic. I am also still working to gain co-payment support from Astellas and Myovant.
Henry sent · 6:38 PM What about orgovyx? Just one pill per day, + 2nd line.
Henry sent · 6:39 PM ok Hey Prof. Herb — what do you have to lose from ADT + abi? Everyone cares about you, Prof. Herb!!
AnCan- rick sent · 6:50 PM UPCOMING WEBINAR What is a Pelvic Floor Physical Therapist – & why you need one Wed, 3/29 8pm Eastern Register here https://tinyurl.com/4sdhzucf
Frank Fabish Columbus OH sent · 6:52 PM Got to go guys. Praying for you Herb.
Len Sierra sent · 6:53 PM Continuous vs Intermittent ADT: https://jamanetwork.com/journals/jamaoncology/fullarticle/2436836 Conclusions and Relevance Intermittent androgen deprivation was not inferior to continuous therapy with respect to the overall survival. Some quality-of-life criteria seemed improved with intermittent therapy. Intermittent androgen deprivation can be considered as an alternative option in patients with recurrent or metastatic prostate cancer.
AnCan- rick sent · 7:00 PM peterk@ancan.org
Peter M sent · 7:02 PM Good night gents!
Bob G sent · 7:02 PM Goodnight all.
Michael Wyn, Colorado Springs sent · 7:15 PM thx. g nite
gary peters sent · 7:19 PM Thanks, guys. Take care. G
